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Coping with Caring

Hi, I am new to here. My husband was diagnosed with RRMS in 2003. He has since been diagnosed with secondary progressive in November 2015. He has steadily got worse since this time. He is now suffering with tremors and very decreased mobility. He is 47 and looks like he will have to take ill health retirement imminently. I am his sole carer. I work 11 hours and claim Carers allowance. We do have family but they seem to ignore the fact that he is getting worse and are just getting on with their lives, going on holiday etc. Every day is a struggle getting him up showered and dressed and then in reverse in the evening. He does not seem keen on having carers and even if he did there is the funding. With him still classed as working we cannot get any financial help and when looking into it, costs to have help a couple of hours a day would be a few hundred pounds per week which we cannot afford.

just wondering if anyone can offer any help/advice. I have been in touch with a carers organisation near to where we live and they just advise to try to remain positive but this is becoming very difficult.

Thank you

Your husband should be able to get some financial help for carers, I don’t think that’s something that anyone really wants but sometimes it’s the only sensible option. I’d thought it would be Attendance Allowance (which my wife receives) but that’s for over 65s.

You’d be looking at PIP, I think. Check if you're eligible for PIP - Citizens Advice

Hi, You sound as if you’ve been left on your own and your family won’t or can’t help you. You should look into applying for Personal Independent Payments which are benefits for people with disabilities. Get an appointment with your Citizens Advice Bureau and find out what your options are. Best wishes, Anthony

Many thanks for your help and advice.

Hi,

Many thanks for your help and advice.

Have a frank chat with hubby and tel him YOU are struggling. Contact social services, ask for a care assessment, it may be that you qualify for Direct Payments. If not then, yes you have to self fund. But if he needs help washing, dresssing then you can get a carer coming in to help.

You can specify male or female and really, you get used to it. Ask him to think, what happens if you put your back out? Even if only for some days, it would give you a break.

And look into your local carers centre, there is stuff happening to care for the carers https://www.carersuk.org/

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Thank you for your advice. We have been in contact with Social Services and started the process with them.

I am the mother of a daughter with MS. Mt daughter was diagnosed when she was 13 with PPMS and now is severely disabled. I would like to find other parents that have a child with MS to chat to.

Hi,

I posted a couple of months ago about getting help/carers for my husband. We have contacted social services and have started the process with them. Last week we got a call to say care had been agreed but no agencies available at times we require. We also asked about respite care but finding the right place is proving difficult. Things are becoming very difficult with him falling on most days and him not being safe to be left alone. Family are trying to help but lifting is a issue. Just wondering if there is anything else we can do to keep him safe like a private care home for a while. We need to get a wetroom installed as our bathroom is not adequate so he will need to be out of home for that. Has anyone else had similar problems?

thank you, Nicola

If private care for respite is an option, then so (maybe?) is private care for home visits at a suitable time. The slots available form the agencies as a private customer can be more flexible than those available via Adult Social Care. Even if only in the short run, it might help. For sure, there’s the risk that if you start paying yourself, you’ll never get any money out of Adult Social Care again - I would worry about that too in your shoes - but if you’re on your knees and risking your health in trying to manoeuvre a disabled adult when you have neither the equipment, the skills not the muscle (it usually takes at least two people to do safely) then your health and well-being have to be the priority here, I would suggest. You can cross the other bridges as you come to them.

I am sorry that you and your husband are in such a bad fix, and I wish that life were easier for you.

Alison

Hi Alison,

Thank you very much for your help and advice. We are going to speak to the Social Worker tomorrow and see what advice they can give and look into private care/respite in the meantime.

Thanks again,

Nicola

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You are welcome.

Do tell it like it is when talking to the Social Worker - it is all too easy to slip into the ‘very well, thank you, Doctor’ trap - particularly if you are trying to spare your husband’s feelings and shield him from the worst of it. So if you and he need to have a frank discussion before you feel able to lay it all on the line to the Social Worker, please do try to do that., however difficult. In the long run, this is about quality of life and well-being for both of you.

Alison

Thanks Alison, will definitely be spelling out how bad things are.

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Hi Nicola, I am a carer for wife Sue. Sue has PPMS and has been on DLA and then PIP for about 12 years. I am on carers allowance. A carer can earn up to about £440 a month on top of the CA. I used to work part time but now am a full time carer. It’s worth applying for PIP, we find it a huge financial help, the assessment is robust but fair and the assessor came to us. I hope this helps and please ask any further questions. Martyn.

Hi Nicola, I hope you are coping better since your initial message. I have been caring for my wife for over 20 years. She could not manage without my full time care which includes washing her, dressing her, making her meals manage her incontinence and getting her around in a wheelchair. I also do the washing, ironing, shopping, cleaning and general maintenance of the home. I found that a regular routine is the only way that I can manage. I do the same routine everyday from emptying her night bag, giving her breakfast in bed to putting her to bed at night. It is very difficult and gets more difficult as I get older. I am now 78 and have considered carers, but because of savings I would have to pay for the care and also the carers come at their convenience which would take a big chunk out of our day. I did have a 4 hour break once a month, but that has been taken away due to council cuts. In your case i would try and get help from social services, for me, I will try and manage till I drop, because like your husband I am reluctant have them break up my regular routine, plus the fact that I know my wife’s mental, physical, and emotional needs better than any outside carer. Don’t feel guilty if you do bring carers in, not all people are as daft as I am.

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Hi Ratmouse, I read your post with a smile because it was us to a tee. Sue has PPMS and I like the routine of steady caring. There is a lot to do but the routine is so helpful. I am 62 so a bit younger, but we both love our spouses to bits and I love making her comfortable, massaging cream into her feet and all the general run of things. I’m sure you, like me must get frustrated at times. Thanks for a very encouraging post. Best wishes from one daft carer to another.

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Ratmouse, I am responding to your comment that having LA carers in would cost you money and also mess up your routine because they come as and when rather than reliably at certain times. Have you considered engaging carers privately? It is (in my experience) easier to secure regular slots as a private client., so at least you and your wife might be spared the aggravation of people turning up at unsuitable or hard to predict times. I’m talking the larger agencies here, and my experience has been positive. They will usually get someone to, you come what may, even if your regular carer is ill or on holiday or otherwise unable to attend, and that is a great advantage over engaging an individual. Your LA will probably have a list of organisations they use themselves or are otherwise suitably accredited.

At the very least, it might be worth making some enquiries and finding what’s available and trying it out to see how it goes. Apologies if you have been round this loop already and found it doesn’t suit.

Alison

Thanks Alison for your useful comment. I recently spoke to our MS nurse and asked her what the procedure will be when I can no longer cope with caring for my wife. She has been very helpful over the years and has arranged adult services to contact me with a view to respite care and future long term care. The problem is for me to let go, if she ever did go into care I would feel so guilty, plus I would also worry to death over how she is cared for. I am not exaggerating when I say I do everything for her out of sheer necessity, from showering to doing her hair. She cannot stand to do these things for herself. I will, however, bear in mind what you have said and make some enquiries.

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Hi Gavel,

Many thanks for your help and advice. My husband gets Pip and I have recently been awarded CA. I now work 11 hours.

Thanks again,

Nicola

Hi Ratmouse,

Many thanks for your response.

We now have carers under the LA coming in 5 mornings a week. Both my husband and I were extremely reluctant to go down this route but it has become necessary. I have great difficulty in lifting my husband, he can no longer walk and often finds it difficult to stand. It is like lifting a dead weight at times. We had to go through a financial assessment as I work a few hours and my husband is still classed as employed even though he is currently going through ill health retirement. It may be worthwhile going through a financial assessment to see if you would be entitled to any help towards costs. You could also look into finding a personal assistant for your wife, someone that you would employ and have come at your convenience. We will probably look into this at some point in the future. Again the LA can help with this. They can also help with respite care.

I was dreading having the carers coming into our home and disrupting things but I have to say that I have found it easier than I thought. The carers are polite and just come and do what they have to and go. We are now having to consider extending the care to 7 days mornings and evenings due to a decline in his condition.

I admire you for what you are doing for your wife. I do feel bad at times that carers have to come but it was getting to the point where I could not cope with lifting etc and we had to put safety first. As I am fairly young (44) I do fear that people think I should be able to do everything but sometimes it is just not possible.

Kind regards,

Nicola

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